Kampala, Uganda | THE INDEPENDENT | Agnes Emujong battles Kaposi’s sarcoma, a type of cancer that usually affects people living with HIV. The disease has made her develop large protruding tumors on the nose and eye areas that have almost shrunk her face.
Among the five that Uganda Radio Network approached as they begged drivers stuck in evening traffic jam for help on Thursday evening, she offered to share her cancer treatment story through a colleague who stuttered a few sentences in English.
Her next treatment appointment at the Uganda Cancer Institute (UCI) is scheduled for March. But owing to high transport fares, going back to Moroto wasn’t an option so she chose to stay back. Luckily she was given shelter by a cancer home that she is hesitant to mention. She resorted to begging for food after the package she came with in December got finished, she says.
Like Emujong, many cancer patients from the countryside have had to find a residence in Kampala as they seek care from the Institute.
Christine Namulindwa, a Public Relations Officer at the Institute says the idea of having cancer homes was born out of that need since the institute can’t house all those due to the overwhelming number of patients that they receive.
She said whenever they can’t retain a patient, they always give them an option of going to cancer home as they come back for review or radiotherapy, a service that is solely offered at the institute in the whole country.
However, even as these homes – about five that are recognized by the institute are offering an option for those in need, some have had their patient residents like Emujong loiter on the streets, begging for among others food and treatment money.
At the Nsambya based women’s cancer home called Patient Relief Mission, Sheilah Munyanziza the founder says this is against the principles that these centres were set up for.
She said such cancer homes are supposed to be ‘begging’ on behalf of patients.
Munyanziza who is also a cancer survivor said, patients shouldn’t be going to beg on the streets because cancer is already taking a huge toll on them.
But, Arnold Beyaraaza, the Executive Director of the Kiota Kona Cancer Home told URN in an interview that running such a home is very challenging as they have to depend on donations to run.
He said that while they are set up to offer a decent accommodation and meals as patients seek care at the hospital, they are sometimes forced to chip in to pay for some treatments when desperate patients run to them.
At the home, Beyaraaza was hosting 30 residents, the majority being cervical cancer patients who he says have a lot of needs which complement treatment.
“We just can’t turn away patients. It’s a lot of bills here and its people who have to foot them because we depend on donations. Those homes sending patients on the streets must be overwhelmed”, he explains, adding that until recently, homes were enrolling really big numbers but Kampala Capital City Authority has now restricted them on numbers depending on how big the place is.
Dr Gerald Mutungi, who heads the Non-Communicable Diseases Division at the Ministry of Health says that they only allow places that can fully take care of patients to start cancer homes and that it’s unacceptable for a home to send patients begging on the street for food or for a huge number of them to piling in a single room.
He says this is the reason as to why they resolved to have uniform guidelines for homes such that they run in a proper and safe way.
He said the drafting of the guidelines started after they started hearing stories of patients being taken advantage of in some homes.